Bain Brain Lab

Our growing lab and collaborators! neurology.columbia.edu/research/resea…

It is a pleasure to collaborate with n-Lorem Foundation for treating ultra rare genetic disorders. Our lab is now treating 12 of the first 50 patients (WOW!!!) with custom ASOs in the clinic and our queue is growing. academic.oup.com/nar/article/54… nlorem.org/new-publicatio…

Next step, how can we make this sustainable and applicable to more patients in our healthcare system!

Participating in Clinical Research: What Patients and Families Should Know rarediseases.zoom.us/webinar/regist…

Check my friend and colleague, pediatrician Dr. Alisa Minkin! Listening to "Helping Our Autistic Kids Thrive with Temple Grandin, PhD" at buzzsprout.com/2570205/episod…

Thank you to the HNRNP Family Foundation for supporting our team in writing about SYNCRIP related disorder and assuring we are making it more well described in the literature! @HNRNP_Family @hnrnp_connect ncbi.nlm.nih.gov/books/NBK62258…

In May we recognize TUBB4A Awareness Month💙 TUBB4A-related leukodystrophy disorders are rare genetic conditions that affect the brain’s white matter, disrupting myelin sheath development. These conditions can impact movement, development, and coordination.

Join n-Lorem CEO Stan Crooke and Callan Pleasant for an heartfelt conversation about raising a child with HNRNPH2, a nano-rare disease. Listen now! youtube.com/watch?v=f6jk3z…

And congrats to the growing list of international sister orgs!! Keep it going as we grow out internationally!

Phenomenal trip to Brighton UK for the first HNRNPH2 Meeting of 2026! Thank you as always for hosting and great to see these amazing families and growing girls (and boys)!!! @YBRP4hnrnph2 @n_lorem @KidsAtColumbia @WeinbergCP @hnrnph2_japan @HNRNP_Family

Let’s treat some adults!! Bridging the gap in treatment trials for neuro developmental disorders in our older patients! New challenges and red tape to burst thru! @YBRP4hnrnph2

Excited to be featured by partner nLorem!

@doctordobro_ @AANmember Shoutout for @YBRP4hnrnph2 !!!!

⁦@BainBrainLab⁩ highlighting importance of genetic testing in adults with #IDD. ⁦@AANmember⁩ #AANAM

Got some time to learn about neurogenetics Friday June 5th and in NYC?! web.cvent.com/event/2281d18d… @ColumbiaGCP @KidsAtColumbia @Columbia @columbianeurons

For those grieving, the Child Neurology Fdn has created a space childneurologyfoundation.org/willow-and-win…

Film explores disability at the intersection of aging, diversity, representation, and inclusion. Featuring disability rights / disability justice activist, Judith Heumann and New York Commissioner for the Mayor’s Office for People with Disabilities, Christina Curry.

And another to check out from positiveexposure.org/frame/aging-re…

This spirited look at grassroots activism is executive produced by President Barack Obama and Michelle Obama. youtube.com/watch?v=OFS8Sp…

For some good history on disability.... CRIP CAMP: A DISABILITY REVOLUTION On the heels of Woodstock, a group of teen campers are inspired to join the fight for disability civil rights.